Celebrating 3.21

Siddharth and I are celebrating this special day by flying to New Zealand for a 2ish week vacation while Samaira, Rehan and Kabir enjoy an extended party in India with Nani (my mum), Nanu (my dad), Masi (my sister), and “P & A” (my nieces). Sammy & Rehan can’t get enough of their cousins & love spending time with them. Kabir has developed a special bond with Nani that even I can’t compete with. Here is the conversation that happened as Siddharth and I were heading to the airport to catch our flight to New Zealand.

Me: Sammy - Mumma & Daddy are going to New Zealand now and you are going to have a lot of fun with Rehan, Kabir, Nani, Nanu, Masi, ‘P’ didi & ‘A’ didi.

Samaira (whispering softly): Mumma – Maybe I can come with you to New Zealand. Is that a good idea?

Me: It is just Daddy and I who are going to New Zealand this time. How about you party with everyone at Nani’s home and go eat some ice cream now?

Samaira: Ice cream. Woohoo! I love ice cream. My favorite flavor is chocolate. But I will have vanilla, just like you. (I had told her at some point that my favorite ice cream flavor is vanilla.)

…and she ran off to find her ‘P’ didi and “A’ didi so she could drag them to eat ice cream…

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Siddharth, Sammy and Rehan spent a week in Seattle without me because I flew to India with Kabir one week earlier. We co-sleep, and at night Siddharth would put Sammy and Rehan to sleep. In this one week, Rehan somehow always ended up sleeping in the middle as he likes to get sandwiched between Samaira & Siddharth. Here is what happened in this week:

Siddharth: Sammy – Can I give you a hug?

Samaira: No. I don’t want to be touched. (we have told kids to be unhesitantly vocal if they don’t feel like giving a hug to someone at any time)

Next day…

Siddharth: Sammy – Can I give you a hug now?

Samaira: No. I don’t want to be touched. (And she ran off to play with Rehan)

Next day…

Siddharth: Sammy – Can I give you a hug please?

Samaira: No, Daddy.

Siddharth: But Sammy, I want to give you a hug.

Samaira: If you want to give me a hug, then you can sleep in the middle and give me a hug! Otherwise you cannot give me a hug.

Siddharth: ??##!!??!! (Speechless)

Both of us were amazed at two things. (a) She is like me in that if she isn’t happy with something then she shuts down on that topic (I understand it is neither advisable and nor desirable). And (b), With a little bit of coaxing, she could articulate the outcome she expected in a situation. While a lot about this situation is non-ideal and it would be great if both Sammy and I articulate our issues as opposed to shut-down, we were excited to see Samaira transfer her emotions into words.

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Samaira tends to avoid doing anything that is hard for her to do. Her strategy is to get other people to do it for her. For example: If her hand does not reach a switch and she wants to turn on the light, she asks Rehan to get a chair so he can climb on it and turn on the light. If Sammy refuses to do something because it is hard, often this is the conversation that happens:

Rehan: You can do this, Sammy. You are very strong!

Samaira: (Whining) Noooooo. I can’t.

Rehan: You can, Sammy. Let me show you how (Followed by a demonstration). Now, you try Sammy.

Samaira: Noooo. Stop it.

While Samaira needs time to warm up to new challenges, it is heartwarming to see Rehan encourage Samaira to explore her abilities.

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I am convinced that half of Sammy’s heart lives in Kabir. She is always baby’ing him. Not something Kabir is a fan of though. But he has got to deal with the all the extra care and affection that Sammy showers on him. Also, Samaira is convinced that she takes better care of Kabir than we do, and he is her responsibility.

She will often check his diaper to make sure he hasn’t done pee-pee or poo-poo. If she suspects anything, she comes to us and tells us, “Can you please change Kabir’s diaper? He has done poo-poo.”

She is also the first to point out “Kabir is crying. Can you please give him some milk?”

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If you are curious about what everyday life with T21 as an integral part of our family looks like, this is what I’ve got for you. This is our Sammy at 5.

The next challenge we are bracing for is around inclusion. Meaningful inclusion.

Sammy wouldn’t be top of mind if you are looking for a kid who is good at following instructions or protocol. She is a rebel. Anti-establishment of sorts. If we tell her not to do something, then we can say with a fair bit of certainty that she will do it. If kids want to play a game that flows a certain way, then she will be sure to not follow it. It worries me because I don’t know what’s in store for her as she enters kindergarten later this year. I don’t know how many instructors will accept Samaira as she is and accommodate her needs, versus prefer sending her to another environment where her needs could be more conveniently met.

I don’t know how many of her classmates will accept her even though she will not play Hide & Seek, Whisper Challenge, or Snake & Ladder per the rules of the game. How many of her friends will still include her?

One aspect of inclusion is ‘awareness’. Knowing that there are differences and understanding what they are. Another aspect of inclusion is ‘acceptance’. Knowing that there are differences and it is ok! It really is ok.

So, as Sammy will begin her Big 5 transition to kindergarten this Fall, I am more insecure than ever. Siddharth does not share my insecurity. He has more faith in the system, people, us, and above all – Sammy. I am insecure because we will truly be stepping out of our little bubble in which everyone sees Sammy for who she is, and not for what she has or what she can do. I can only hope that the new wave of people in her life will encourage her, include her and accept her.

Something I have heard since Samaira was born was that we shouldn’t overthink putting Samaira in schools that are highly ranked. It is probably better for her to be in schools that are average in rank, because she will have a sense of accomplishment in the things she can do as the environment will not be super competitive. To be honest, it isn’t something we have internalized, yet. So far, our circle of family, close friends (more like family), schools, day cares, teachers – have all celebrated Samaira. Included Samaira. Accepted Samaira. This encourages her to do more and be more.

At the same time, I also realize that 5 year olds are like little adults. They are intelligent. They are sharp. They understand the differences in skin color, language, and abilities. And while they are innocent and naïve, without appropriate guidance from grown-ups, they may not always know how to treat these differences. Some kids will not let these differences come in the way of their friendship. They might even provide encouragement & help as needed. But there could be kids who don’t know how to process and deal with these differences. Their reactions may range from confusion, to mockery, to non-inclusion. While I wouldn’t blame kids for their behavior, it for sure will hurt when it happens. And that’s when I hope, we the adults can play a role in creating awareness and acceptance about differences and disabilities.

In the first 5 years of our journey with Samaira, we haven’t felt the need to have the “talk” with other kids and parents. We have gone with the flow and let everyone discover who Sammy is and everything she can do. I am not sure we can continue to go with the flow much longer. I think we will need to have deliberate conversations and engagements that make the upcoming generation more sensitive and accepting of disabilities.

Down syndrome does not define Samaira. It is an integral part of her. But there is a lot more to her than down syndrome. Her abilities surpass any label that could be associated with her. So, this year, on 3/21, I want to talk about being inclusive. In schools. In activities. In play. In society. It wouldn’t benefit just Samaira, but also folks who are being inclusive. It makes society more open and tolerant to differences. Something we could all use a little extra dose of given everything that’s happening in the world.

Imagine this society: Different skin color, different language, different religion, different god, different faith, any disability, different clothing, different values….no problem. Let kindness and friendship prevail. Everyone is welcome! This is the essence of being human.

If you are curious about down syndrome, I encourage questions, conversations, and discussions. We will be happy to share our experiences and whatever we know so far. We will do our best to find out what we don’t know to answer your questions. Talking and asking questions is the first step to building awareness and acceptance.

Happy 3.21, folks!

PS: 3.21 = March 21^st = World Down Syndrome Day. Medically, down syndrome is defined by 3 copies of the 21^st chromosome. That’s all there is to it. An extra copy of a chromosome. It only means there is more of Sammy to love! Lucky us!